Monday, 24 February 2014

Week 5 Diary Luke Aemia

Sunday 23rd Feb

I didn't have much to write today and was so tired I didn't write it at all and I'm doing it on Monday!
We went out to the waterslide park and had as much fun as you can have while staying out of the water!

Noticed a bit of a rash on her tummy which seems to be from where the adhesive was taken off. I didn't think she was sensitive to either of the things used, but I guess there's a first time for everything.

Monday 24th Feb

So today was spent getting as ready as possible for our admission tonight.
We collected big sister the eldest from school and it took so long we arrived home with dinner only ten minutes before we were meant to leave. Luckily the lead time on the admission was two hours so there was a buffer and it didn't matter that we were 15 minutes after the stated time.

We're back in, in a sort of shared room. It's almost the same as a single but instead of a wall with a desk and your own bathroom, there's a curtain and the one desk and one bathroom in the middle, then the curtain on the other side then the other person's bed. It's as separate as you can get without walls and it's probably about the same as other hospitals without sound proofing, but you can hear their telly and their conversations. They're talking another language so I don't know what they're saying.

We've found three friends already from last admission. There's another little boy with T21 and AML on the same protocol but 2 weeks behind us. He's 8 months. We're next door to him. The 8 year-old girl who enjoys playing with my 6yo is across the hall and next door to her is the little boy we've seen in kinder.

So we've started round two of our chemo. I guess this means the echo was fine. I guess it also means that she's responded well to the chemo. We see the big Dr tomorrow so I'll find out then. She's having a higher dose of Ara-C this time and also Asparaginase (I think!). It's given over a couple of days this time and there can be conjunctivitis and massive allergic reactions, so we'll see how we go. I'm used to it generally being no problem, so I have to remind myself that we might have some of these things go on! I was all ready last time and we had no mouth ulcers, no nappy rash, one tiny fever, no illnesses, no heart problems (except for the fluid overload, which was not exclusive to the chemo). Touch wood we breeze through, but we'll see.

Miss Jacinta did not want to be in tonight. When we got here I tried putting her on the cot and she wasn't having it. Finally after about half an hour I got her there to get her changed into her pyjamas. There was nowhere else! She was exploring the cot eventually and started really reaching out from a sitting position and looking like crawling was a possibility. She also started grabbing the side of the cot and pulling up….someone's been practising! I'll have to keep those sides right up now.

In the car just before we left home, Jacinta started saying "ah ah ah ah ah…..tchoo" and it suddenly dawned on me - she was pretending to be her sister pretend sneezing! This talking thing is tricky to spot when it's so inconsistent!

So they're putting eye drops in now as a preventative and they'll be doing it again at 2am so I might just get off to sleep and get at least some before they wake her!

Tues 25th Feb

So she woke herself! At 2am. They came in with drops around 2.30 while I was feeding her, so we don't know if the drops will wake her or not! She was up til 3 then I couldn't get back to sleep til after 4!! Tired me.

She had more chemo today and was pretty tired. She managed to go off to sleep with the TV and lights on so I left them on to get her used to the noise. It was so difficult getting her asleep and keeping her that way last time that I'm keen to embrace any opportunity to regain the ability to sleep in a hospital environment. Of course, she's not a newborn anymore, but we can hope…

The shared room is a bit annoying at the moment since the machine in the other half keeps beeping and the nurse is coming in to that half and chatting away at the top of her voice. Lucky we've stayed asleep - except for the waking and squirming earlier in the first hour or so of sleeping. She's been quite uncomfortable at times today. We're wondering if it's related to the chemo directly or as an indication of a side effect. I guess we'll see.

Still, today for the first time I had to put the sides of the cot right up because Jacinta decided she'd like to pull herself up - not all the way to standing, but on to her knees. She wants to stop sitting! Yay! She's really starting to move off from that spot to reach out for things and will go pretty far now she's got the confidence to move where she wants to go - from tummy to seat and back again. I need to get the play mat back and get her on her tummy again so she can work those muscles. I had her playing in the play room today, with an activity table that requires her to be a bit higher than sitting on the floor. I put her straddling my leg so she can reach. Today she pulled herself up standing so she could play with the whole thing!

So it seems we won't be stagnating completely while undergoing chemo!

As I said, tired me. Off to bed now. zzzzzzzz

Wed 26th Feb

Well now, today was certainly a day!

It started with the nurse in charge of our "journey" (I hate that word when applied to non-tourist situations) told us it looked like we'd be going home today. That was a very welcome surprise!
It seems the nurse co-ordinator is the one who really knows what's the most likely scenario.

So all we had to do was the last dose of Ara-C then bloods to be normal, then the injection of Asparaginase in the afternoon and a two-hour wait to ensure there were no allergic reactions.

We did all that, though she was pretty unsettled during the chemo. When she did sleep I got things pretty much packed and ready to go, and the pharmacist got our meds sorted.  Then we got the injection. She didn't like it. I was reminded of the parents of children who talk of their child getting their immunisation and screaming and screaming and never stopping……thankfully she did stop eventually. She was pretty unsettled the whole time. She fed for comfort and tried to sleep. She certainly needed it since she'd had one nap up til that point and it was about 2.30pm.  I couldn't put her down for a while, but then she went off to sleep. She woke again after a short time, about half an hour, and had just done a poo. She was upset and quite hot. I took her temp, got 38.3 (and if we hark back a couple of weeks, 37 is significant for Miss J), and called the nurse in.

The nurse who gave it had said to call if there was a fever or rash or anaphylactic reaction. So they had the other nurse check her and she had the doctor have a look. They started talking about keeping us a bit longer. The big head doctor happened to come past the ward and they all discussed it and she said she wanted to keep her 6 more hours….until after 10pm. Staying in overnight! Dammit!

I un-organised the end of the day changes for my middlest who was in and started to organise the next morning. It looked like we'd probably be out after breakfast. Then the fever kept going and she seemed quite bothered and not lucid. We gave her paracetamol. She was clingy and couldn't get comfortable. Then I noticed a rash and told the nurse who popped in to check the machine that goes 'ping'. She took a temp and got 38.5.

She called in the other nurse. The other nurse called in the doctor. He walked in and said, "oh, I thought she was feeding again….oh! She is!" They talked about antihistamines for the rash. The doctor started to talk about antibiotics if the fever hadn't broken by 10pm.

I queried how long a stay that would mean. He said it'd be at least 48 hours after the fever was gone. Sigh. She was still feeding and feeding and feeding. Then she finished, looked at me and started talking about things, using her hands and telling me something quite calmly about her body. She actually repeated herself and said "body" quite carefully. I forget she's one sometimes! Then she was blowing raspberries.

Then she did actual ones and the runniest poo I've seen for a while. We changed it straight away coz those chemo poos can hurt, and when I picked her up, she was much cooler. I took her temp and it was 37.5. (Yay!)

I told the nurse and handed her the yucky bedding and then managed to get Jacinta to sleep, properly.

Sleeping now for two hours and I think we're right for the night.

Fingers X for a good outcome in the morning!!

Thurs 27th Feb

And in the morning she was all good.
It took a while for the doctors to come round, but they were happy that she didn't have a temp anymore. There was a bit of wound care (they change the dressing on the Hickman weekly) and then that was about it.
The music therapist came past, then just as we were all packed and ready to go, the pastoral care worker came past.
This was one who told me about a lovely young man upstairs and just couldn't think of the right word. "Retarded", she reluctantly said, then said he had Down syndrome. I told her we don't say that anymore and that I think the term she was looking for was intellectually impaired. She said, "ah, that's right!". I hope she didn't say that to the young man she was pastorally caring for!

So we got out just after lunch and came home and picked up the daughters one by one and came home and finally made it into bed at some vaguely reasonable time. Nice to be home again!

Friday 28th February

So today was a normalish day. Jacinta had a good long sleep this morning, about 2-3 hours, which she definitely needed.

I organised to see Frozen at the local cinema - since I'd had special dispensation to go to the big shops as long as it wasn't too crowded. I figured it would be ok since it's nearly finished and there weren't many people there.

I did it so well that we almost weren't there either - I was interrupted several times in the ticket booking process and found I'd bought tickets for tomorrow! Lucky the kind person who shall remain nameless let us sneak into the cinema where it was showing today so it all went off as planned.

Later bedtime tonight again, but I remembered all her medicines!! Even the weekend ones!!


Sat 1st March

Well, we got out and about today. Charmed the lady at the bakery as she got us our two spelt loaves and spelt hot cross buns, dipped in gold and sprinkled with frankincense and myrrh (they must be for that price!).

Had a good sleep again today, though clearly not enough because we awoke at 11pm from out 6.30 bedtime having thought it was nap #2. Oh dear.

Not much to report really. One more day at home before we report back on Monday. It goes so quickly! (sigh)

Sunday, 16 February 2014

Week 4 diary Luke Aemia

Sun 16th Feb

Today was a good day. The neutrophils were up so the antibiotics were ceased. This meant that we could be disconnected from the pole and turn in circles without having legs bound like a roast chicken.

We had a surprise visit from Daddy and the elder siblings who immediately assumed that we were all going downstairs. Thought it couldn't hurt to ask so our middlest marched off to find the doctors and see. The doctors said yes!!! (Of course with the conditions that we steer clear of people at every turn and go right outside into the open air.)

So we spent a portion of the afternoon, the whole family out sitting on the lawn in the sunshine. The first moment in about a month when the five of us just hung out together without any intrusions or regulations. So lovely.

Mon 17th Feb

So if yesterday was a surprise, being allowed downstairs, imagine my surprise when our nurse co-ordinator (the guy running the whole thing) saw me in the kitchen today and asked me what I thought about going home today!!

So it turned out that Jacinta's numbers had been trending up mostly and then this morning they were all up-trending so I figure that was enough for the doctors to send us packing.

Of course I didn't believe them at first, since so often in a hospital scenario you think something's going to happen and then it just doesn't. But they kept acting so much like we were going: the pharmacist turned up with our meds, then one of the nurses took us for a tour of the place we'd need to be on Thurs. The afternoon nurse came on and said she'd not be looking after us really, but if we needed anything to call. That was the point at which I really believed them.

Once more I was required to be on my toes a little. The pharmacist brought all the meds out, including the diuretics. Now as you may recall, the diuretics were started after the chemotherapy, because the extra fluid was overloading her system and she went into heart failure. (Which is not cardiac arrest, just a less-awesome level of heart function.) After the chemo finished it only took a day or so for her blood pressure (BP) to drop and her weight to drop and she was taken off them straight away.

This time they reduced the dose right down and they were sending her home on them.  I queried this with the nurse yesterday because I didn't know exactly why she was still on them, except that her BP was ok and her weight was steady. The nurse said "it's back to once a day now", which didn't really answer my question since I don't have baby scales or a BP cuff at home. (Although I do have 'baby weight' on my WiiFit board, which is quite cool - though perhaps not completely accurate. Though I don't know actually, it might be.) I was a little concerned about taking her home like that since the only MET (emergency) call she's ever had was for a very low BP - at 2am which I would have slept right through had not several doctors been making a lot of noise in the room.

When the doctor came round I asked her how I was to monitor her, and gave her the scenario, including that day's weight, which was slightly down. She asked, "is she not normally on heart medication?". "No", I replied. "Oh, we'll just cease them then", she responded, "I just assumed she was normally on them". So there you have it. Realistically, her medical history is several inches thick. I don't expect the doctor to know it all by heart. That's my job.

So, by dinner time we were ready and by bedtime we were home!!!

So, let's see how long this lasts…..

Tues 18th Feb

Now, just to clarify, this is certainly not home for good. This is a couple of days off, which we're quite lucky to get since mostly on this protocol they don't let you home until after round two.

We've been home 24 hours and no problems yet! (Except my older two having extreme difficulty going to sleep…) The Royal District Nursing Service rang today to organise blood tests for Thursday ahead of her bone marrow aspirate on Friday - except late yesterday the bone marrow aspirate was changed to Thursday and the bloods were cancelled. Except they weren't cancelled with the RDNS!

So I explained this to the RDNS and the person on the phone stopped just short of saying "yeah, right, pull the other one". She did explain that they had the order from the Children's and they had to proceed according to that. I reasoned that I should ring the Children's and she said I could do that but that they'd see me Thurs unless they heard otherwise.

So I rang the Children's and a very helpful person who I'd never met before said she could sort it out for me. The RDNS rang back again an hour again and said they'd received a cancellation, as I'd said they would and they wouldn't be coming.

So I'm coming up with a theory. The closer a practitioner is to the top of the chain in terms of decision making with a person's treatment, the more likely they are to listen to me and take my word for it.
The further they are from the top of the chain in terms of decision making, the less likely they are to believe what I say.

So from this theory we can formulate a policy in terms of methods of operation. If I am speaking to a person who just isn't grasping or acting on what I'm saying, go higher. This doesn't mean escalating in the corporate sense, more choosing the moment. The hospital system is designed so that you do see the right person at least once a day and they're hanging around if you really need them. At key points they do also come and find you. They even spot you in the parent's lounge and come in for a chat if need be.

It's much easier not to get frustrated by nurses or clerical staff who don't seem to grasp the concept, despite having English as their first language. Simpler by far to leave it until you can find the guy who can fix it. That is, unless it's about something which is imminent, in which case throw yourself over your child and don't let anyone touch them until you've spoken to the guy in charge. Those are my thoughts on the matter. Take them or leave them!

So today, three weeks into the school term, we made it to school! We also snuck in kinder pickup and drop off - being very sure to stay outside as long as possible and minimise the time spent in the building, and definitely avoiding anyone else's space. The quizzical looks I got as I held the door for every other parent collecting their child and volunteered to go last. "Are you sure?", was the general vibe. No-one ever wants to be last.

And as I type it's 10:45pm and my middlest, who had a sleep at kinder and again on the way home, has just fallen asleep in front of me.  Oh the meltdowns tomorrow. Still, I prefer meltdowns to nothing at all!

Wed 19th Feb

Well thank goodness I'm keeping this blog. I'd have no idea what the date was if I wasn't!

So today we're still healthy-looking, if a bit tired and possibly slightly pale.  The haemoglobin was meant to be going up on its own, but I'm wondering if it really is. The hospital Day Oncology person rang today to confirm the procedure tomorrow (BMA and LP) and mentioned that at last count the haemoglobin was 81 (which was up) and they might transfuse. I guess we'll see. We did know that number when she was discharged so if the numbers have gone up they may not. 80 is the borderline between low and dire so she's not expected to be super-ruddy at 81.

I've managed to give her the medication she needs and keep her Hickman out of the nightly bath. My memory's not completely shot it seems, which is something.

So I'm off to bed in a minute to grab a couple of hours' sleep before getting her up for a last feed about 4am then maybe another hour or so and up with my middlest and out the door by 7. I so can't be bothered doing the early start and pre-peak traffic, but I guess we'll have to. (sigh)

There's a 50/50 chance we'll be staying in overnight after this procedure. The last one had her on oxygen for over 24 hours. I've got fingers X this shorter one doesn't though. My husband's birthday is this weekend and I'd really like to be home for it!

I guess we'll see what happens. Nite!

Thurs 20th Feb

So, after the excruciating process of fasting from ridiculous o'clock and not getting back to sleep, we arrived at 8 on the dot to the surgery reception. We pretty much went straight through to a waiting area near recovery, rather than the usual area. On the way in I was wracking my brains trying to work out how to manage my 3yo somehow so I could take Jacinta all the way through to theatre and keep her company while they put her under. No bright ideas popped up so I resigned myself to having to wave her goodbye while they wheeled her off. Not my preferred option.

While I was waiting in the waiting area, the music therapist appeared and put a mat on the floor. I wondered if she doubled as something else in her spare time. Then she put a sheet on the mat and brought out her guitar and box of percussion items shaped as animals. It was music time in surgery! Such a great idea it is too, with all these patients oncology patients it seemed, they were on a long line of procedures to be done and there were three waiting at that time. Oncology patients getting routine tests, like bone marrow aspirates, don't necessarily feel ill so are definitely looking for distractions so they don't tear up the room with boredom.

My 3yo happily plopped down on the mat and joined in, since we were old mates. We sat down too and spent 10 minutes or so singing away before they came for Jacinta and asked me to take her through. Argh! I had no plan! I decided to risk it. "I'm just taking Jacinta through sweetie", I said to my other daughter, and off I went. Normally she follows me so I willed her to stay in the one spot and not go wandering through the operating suites in search of me.

I took Jacinta through and again she didn't want to, which I can completely understand (the idea of being anaesthetised and people doing things to me without my knowledge completely freaks me out), but she did let them put her to sleep within seconds and I kissed her goodbye and went out again, back to the waiting area. There was little miss 3, sitting on the mat with the music therapist, playing barbies. (Of course…) Apparently once the kids get sick of singing songs, they just play barbies. Fair enough.

So we popped downstairs for a few mins and came back with a couple of minutes to spare. It was pretty quick. The lovely Oncology Fellow who had been our doctor until a week or so ago has now started in Haemotology (since they all work closely in leukaemia, and most children's cancer is leukaemia). She came out just before Jacinta and gave the thumbs up and said she went really well. It was so nice to see she's still looking after Jacinta's blood - just in a different way.

Jacinta wasn't happy with my absence, but forgave me very soon and was off all monitors pretty quickly. None of this 'low sats' business. Then the great 'where do we go next?' game began.
The recovery nurse assumed I was going to the ward. I told her I was hoping that we weren't. "Hmmm", she said, looking puzzled. It seemed as though people usually just go back to the ward and she didn't know where else we could possibly be going. I told her we were expected at Day Oncology and she rang them. I also said we had been supposed to go from recovery downstairs to the cardiology clinic for an echocardiogram, but that this was all a bit complicated because our Friday procedure had become a Thursday procedure and I didn't know if the echo had moved as well. She rang downstairs. Echo still booked for Friday. Too complicated! She rang Day Oncology and sent us over there, very early for our 11.30 appointment, and hoped they would sort us out.

Earlier, while we were waiting for the surgery, the nurse came out and had a chat. She said they would be doing a transfusion (haemoglobin) later in Day Oncology. I said that I thought this was going to depend on the blood results from the sample they had not yet taken. She said that since the level was so low, that they'd do it anyway. I said that the doctors had thought that since her levels were going up they were going to leave it. She started to explain what can happen if it gets too low. "One of these…", I realised. I left it. (Because as we've learned, a nurse who doesn't say, "I'll double check that", after several queries is a nurse whose mind will not be changed.)

I arrived in Day Oncology and they said they'd work it all out somehow and play it by ear and to take a seat. I started to settle in for the hour when the Consultant came around the corner and called us in.
She talked us through the scene and said that since Jacinta's haemoglobin was up again she wouldn't be doing a transfusion. She also confirmed that if the bone marrow sample came back showing very little or no visible 'blasts' (cancerous white cells) that this would indicate that we should continue the protocol we're on, which is the gentler level of treatment. I get the impression that we're expecting this result. The other result means we have to up the intensity and it's much less fun.

I asked if we really had to come back for the echo or if it could just be done while we're in. She said they needed it to sign off on the chemo so she'd ask reception if they could work out a squeeze in.
After going down and asking, and it looking unlikely, and them having a spot at 3.30 if we could hang around, I got a call straight back saying "come now!". So we got the echo done. The person doing it said there was a leaky valve. There is always a leaky valve so this shouldn't be a concern, but she wanted to run it past the cardiologist anyway. This put a slight element of uncertainty across the whole thing.  What if it was more than last time? Would that mean having to change the protocol? Would it mean more heart surgery? (Noooo!)  She said if there was a problem he'd call later today. (And we all know how that went last time!)

So I went back up to Day Oncology like they asked and when I got there, I heard I was being asked after. I was ushered through to the treatment area and the nurse from before the procedure reminded me about the transfusion. "But we're not doing it", I replied. Everyone looked confused.  I explained that the consultant had decided not to since it was up slightly, and someone else chimed in and agreed that it was up slightly and in moments it was agreed that we wouldn't do it.

We still had to 'strong lock' the line though, so it's lucky I did go through. That would have lasted a couple more hours before it couldn't be used anymore. Strong locking is putting an anticoagulant in the actual tube to stop blood clotting in or around the tube. None of it goes into the blood stream and when the line is needed again, it's pulled straight out again. It takes all of about 30 seconds.

And with that, we were out of there!

So, once again, the lesson of today is: query, query, query.

I'm really starting to notice that many of the medical staff operate on assumptions, which is guess is necessary most of the time. I don't know why we seem to be so different all the time, but the assumptions don't seem to apply to us!

So when I see a confused look, it's probably an assumption being challenged. Persevere and the truth will out! Eventually…….

So nice to be home!

Fri 21st Feb

So we did a bunch of not much today, and not much happened.
I did forget it was Friday on several counts, not least of which was that a medication which is supposed to be given Fri-Sun got skipped - oops! Its the Bactrim. She won't die if it's skipped, I think we just give it Sat-Mon instead.
Not much else to report except that being home is still lovely.

Sat 22nd Feb

Today Miss J was sporting a runny nose - eeek! Then she brought on some dribbling, rosy cheeks and lots of chomping on her hands - phew! This must mean her system is largely back to normal because the hospital dentist said her teeth would slowed down a lot by the chemo. Yay! (Except for the teething part.)

I spoke to the ward and confirmed that I do now give the Bactrim Sat-Mon. I find it so hard to remember sometimes. I was feeding Jacinta and she was getting pretty comfortable and ready for bed this evening and I remembered we hadn't done her second dose, which meant force feeding her 5x 0.5ml servings of evil banana-flavoured syrup. Not relaxed after that one! I did remember to bath her and change her tape on her Hickman though, and even did the Curasept on her mouth (antibacterial stuff to stop ulcers and bugs entering the system orally). Ticked all the boxes!

So I also confirmed that we're checking back in to the hospital on Monday evening. Almost exactly one week to the hour. I'm so pleased we made it (touch wood the next 48 hours pass uneventfully, though I suspect her neutrophils are over the base good level anyway). While checking my home phone messages today I found one from Thursday, from a RDNS nurse who was about 20 minutes away….. (now that's a serious lack of communication there, see Tuesday!)

Tomorrow we have a day of fun at the waterslide park, where she and I will be hiding from the sun in our cabana (which is not a sausage but a little marquee) and keeping well away from the general public and the water! Super fun! (Should be good, though, really.)


Sunday, 9 February 2014

Week 3 Diary Luke Aemia

Sunday 9th Feb.

So today was a fairly quiet day. We started on some potassium supplement, since the diuretics tend to cause potassium loss. This supplement is quite strong tasting and she doesn't enjoy it - even more than she doesn't enjoy the diuretic and the Bactrim, which will put her off Barney Banana icy poles for life. The upside is that she's getting better at swallowing, since rolling it around in her mouth doesn't get rid of it and swallowing means it's gone, so there's hope for drinking out of a cup some time this year!

A new doctor came along and met Jacinta right when she was building up to a big air kiss - which he got and felt very pleased! We got to hang out with Daddy today, which is a rare thing at the moment and was very nice!

Overnight her temp was low - 34.8ish and they got it up to 35.5, which is OK. Today she was more like 36, 36.2, which is very good! Sometimes though I think that if she's a bit sweaty she feels colder on her skin than she actually is, so measures low. That's my theory. Who knows.

As I got Jacinta dressed this morning, I looked at her bed and noticed it had quite a lot of hair on it.
"Here we go….", I thought. Then I looked closer. Most of the hair on it was mine!! Looks like I'm growing natural layers to complement my natural fringe!

This evening I got everything organised, timed and good. I had her asleep by 7! Woohoo!
I had grand plans to sneak out and drive my car back home or do some washing and was catching up with things like writing this very diary entry…..when the beeping machines went off. They do this often, she stirs but goes back to sleep. The nurse rushed in and turned them off and said, in her best big voice, "gee, it's loud, isn't it?". And she was up. 40 minutes later she was back down.
Ah well, another night.

Monday 10th Feb

So today we had the last of the disgusting potassium (its official name) and we're just having the yucky lasix and the new unknown spironolactone. The antibiotics are also easing off and we're on the last one. the cultures are all coming back negative, which is good.

The doctors are spending about 30 seconds in the room, extolling her virtues and then leaving pretty much. We're still neutropaenic, which is when the neutrophils are at virtually useless or nonexistent levels. Neutrophils are certain white blood cells which are the front line defence against illness. The levels of neutrophils tend to mirror the levels of white blood cells. Hers are at 0. They've been around there for the last few days. I'm not sure how long they hang around for, but someone mentioned a few weeks ago that around day 22-25 post chemo we'd be looking at being around the .25 mark. We're at day 18 currently.

I spoke to the French nurse who was looking after us today. I've had a French nurse and a Belgian nurse and I liked both their styles. Very practical. This nurse could see Jacinta was fine so wasn't worried when the blood pressure cuff wasn't doing its job. I prefer this sort to the sort that freaks out at a funny reading and thinks only of what the machine says and forgets to observe the child!

This evening I made it home with the car, mostly because when I told her I was going out she said she wouldn't go in that room for anything, even though she had hoped to do some obs(ervations). Everything was cancelled while I was out of the room. She stayed asleep. I've been back an hour and she's still asleep!

So this cool nurse asked me what our future plan was. I said we appeared to be receiving information on a 'need to know' basis and had no idea what was happening next. I've heard that we'll go home for a day or so after each chemo, that we'll go home after some of them, maybe, and that we'll be here for the entire 6 months. She said that 10 years ago, there was no leaving the hospital at all, but that modern thinking was to let us out a little bit. It comes down to who your doctor is and what they think, she says. That's encouraging.

Another thing she said is that she was surprised that we're not being looked after in the transplant area. The transplant area is a sterile area with swipe cards and double doors, gowns and masks. No children between the ages of 1-16 years are allowed in. Only parents and one or two other designated people are allowed in ever. She said that normally children with Trisomy 21 and AML are looked after in that area. She thinks we're not in there because we have small children who need to visit. She also said not to be surprised if we do wind up in there at some point. Fingers X we don't!

So we're hanging out and crossing fingers we might be looking at a day at home in the next couple of weeks….

Tuesday 11th Feb

I asked about that today. The doctor seems to think that we may get out for a couple of days 'for sanity's sake' at the end of the cycle - if she stays healthy. According to the doctor, the first round is the most intensive and kids tend to struggle most with the first round, then the second and third are only two drugs and much easier to take. She was quite amused as she told me this in front of our happy-as-larry daughter who has had a bit of a fever, some fluid retention and nothing much else to speak of. Clearly she's in better shape than most. Yay for Jacinta!

She also clarified things a bit on the timeline. We can expect to be neutropaenic for a couple of weeks. This will mean another week at least I think, maybe two. Then we can think about sleeping in our own beds for a night. Then we most likely get an infection, come straight in and start chemo again once our neutrophils are .75. That's what I've heard.

The good news is that Jacinta's platelets and haemoglobin are holding steady without transfusion, which is good, and she had a smudge more neutrophils today so we'll watch with great interest to see what those do.

Today we hung out. We're hooked in with the speech pathologist, occupational therapist and physio - it's kind of hard to avoid them without looking like a complete idiot. I'm happy enough with the OT and speechy so far, but I really wish the physio didn't act so much like a physio. She was grumpy after about five minutes of being constantly interrupted and manoeuvred and manipulated. I would be too. Oh, what I'd give to be able to fit my crawling track in the door. What befuddles me is that she seems to be trying to correct things that would correct themselves if Jacinta was crawling. Her feet are still splayed, they need to be if she's to commando crawl, then as she cross-pattern crawls (creeps) she'll straighten them.

The physio is trying to show her to put weight through her legs and show her the feeling of having them straight and weight bearing. It just seems so complicated when we could just get her on the floor and moving with the crawling track!! I'm inclining the bed at times so she can go down on her tummy a whole metre. Have to make do with what we've got! It really does feel silly to be doing all these little sub-actions when we could work on the big ones - and achieve brain growth across several areas incl eyesight. There is also emphasis on building her shoulder muscles so she can hold herself, which is valid too, but commando crawling works the shoulders, thighs and midsection. It's a brilliant workout which amazingly gets the body totally ready for the next stage.

Anyway, we'll persist. As long as she's in good spirits we have the chance to work at it, so we will. I'm keen to start some card things too, such as the maths and reading cards. Might as well since we're twiddling our thumbs a bit. That'll be plenty to be going on with for now!

Wed 12th Feb

I think I need to start by mentioning that when it takes me more than 2 hours to get Jacinta to sleep for one reason or another it is VERY IRRITATING!!!

The good old 'talking nurse' has reared its head again, a different nurse this time, but in addition she's just generally 'not sleepy', as you would expect of a 13-month old for a reason known only to them.

Anyway, all good news today. No changes particularly. Off the lasix/frusemide unless we're having transfusions, which we're not because Jacinta's haemoglobin and platelets levels are holding and her white cells are coming up. The doctors said today it's a good sign because if she's making white cells and platelets then her bone marrow's waking up. Yay! Things are going along as they should.

They also intimated that if Jacinta keeps acting like there's nothing wrong with her, she'd be allowed out for a bit in the next couple of weeks.

Now, being allowed out of hospital when your child seems perfectly fine lends itself to visions of throwing yourself into life as it should be and catching up with everyone you've missed over the last few weeks…..and that's pretty much exactly what it's not!

Because her neutrophils are still going to be less than 1.0 at this point, she's still quite prone to infection but there's a window of time to get it treated before it becomes dire. They let you out for sanity's sake, knowing that you won't die if you are 30 mins from the building.

As it is though, she still shouldn't be playing in the dirt and can't go to the beach or the swimming pool, can't be around anyone who's sick or who's been around anyone who's sick. Could still catch anything from her sisters or other children.

This basically means no trips to school pickup or dropoff or kinder pickup or drop off. No visitors really, no visiting really. Basically it's being hermits in the house and getting out while she's asleep maybe. Still, it's better than being stuck away from the rest of the family, with Skype the best form of communication available (and you can't hug on Skype).

Then, once you're home, you'll most likely be back in hospital again in a day or two with an infection, so you make hay while the sun shines and cross fingers that it's more than 24 hours!

So the Consultant (who's the doctor overseeing everything) came past today and was slightly incredulously impressed that Jacinta's had a tiny fever, a small bit of diarrhoea and some retained fluid. Especially since they were quite concerned (it turns out) about the fluid retention and heart failure stuff earlier on.  Jacinta's kicking goals again, and the footy season hasn't even started!

So for reasons best known to Jacinta she's still up, since me trying to help her get to sleep amounted to little more than nothing. Right now she's practising crawling, so I've declined the bed to give her a bit of help. The other way she kept going backwards and getting stuck with her feet through the bars.

I wonder what time we'll get to bed then……nite!

Thurs 13th Feb

It was 10pm.

I decided not to be cranky at the nurses anymore since really it's just a symptom of something I didn't handle right in the first place.

I just told the no.1 noisy culprit that Jacinta's a really light sleeper and gave her the opportunity to not wake her, which she didn't really have last time. I just expected her to know - and in the hospital the one thing you should not expect is for nurses to know! (No reflection on nurses, just info only travels so far and they're not mind readers. In their defence, whenever I query, they go back and find out for sure.)

Anyway, today was a good day. I didn't hear back on the neutrophils in the end, but all the counts are doing the right things and Jacinta is still acting healthy.

We had little miss middlest join us in the hospital today and got to go to kinder session with one of the loveliest teachers you'll ever meet, and had the music therapist drop in for a singalong - one of the loveliest musicians you'll ever meet. This hospital is so very appropriate for siblings as well as patients. I would think that most of the facilities here - the meerkats enclosure, the mini aquarium, the movie cinema, the starlight express activities room, the huge touch screen games console - would be accessed by the siblings of patients much more than by the patients themselves, who are mostly too ill to come downstairs. It's entirely possible to spend a whole day here and not get bored. We still had things to do when it was home time.

She's definitely losing hair now. It's not completely noticeable yet, except when you look at her clothes and see hair all over them.

Here she is…

A little bit thinner all round and she's lost her fringe. Still the odd curl here and there.
Still, she's chipper.

On the slimmer side today. It's amazing how fluid retention and release can affect your body shape in a matter of hours.

So we're waiting….still touching wood (the doctor actually did) that we skip any more fevers etc. and they let us out for a minute next week.

Big fingers X!!!

Friday 14th Feb

Today we pretty much hung out and did not much!

It was Somebody Loves You Day in here today and there were flashing heart headbands, flashing love heart pendants and love heart chocolates. I was just about to receive visitors when I was offered a manicure so I went down for the manicure and my visitors got one too.

Miss J's platelets are rocking the treatment, highest ever levels since we arrived so something's working.
Her haemoglobin's hovering around the level of a transfusion. They'll revisit tomorrow.

That's all I can think of!

Sat 15th Feb

Today we had a bit of a temp coming and going. It got to 37.7 at one point then went down again. I haven't seen the neutrophils yet but I think they're yet to move. The platelets are the first sign of the marrow waking up and the white cells come after.

Not much to report again today. The haemoglobin was one tiny point lower which in the scheme of things is actually good. If you're making none you drop a bit but if you barely drop you must be making some at least. They'll wait for the cells to recover rather than transfusing at this point.

Yesterday I forgot to mention that I spoke to the nurse co-ordinator about the next round of treatment. It seems we may start getting a little bit of time off here and there, which would be nice, although probably a bit disruptive on the siblings. I think it's better to be home a little than not at all though.

Miss J's ready for bed so I'm off!

Friday, 7 February 2014

Week 2 Diary Luke Aemia

Mon 3rd Feb

The new doctors all started. They're on rotation and they've all done musical chairs. Ours is Scottish and I don't know his name. He did say some magic words, "you'd never know you were sick", after examining Jacinta for a few minutes. Then he said something else and I didn't quite catch it. I normally don't have an issue with UK accents, but his is super thick! (It was to do with monitoring etc.)

We revisited the early bedtime that's mistaken for a nap this evening. Accordingly, Jacinta didn't get to bed until about 10pm. At least when this happens she doesn't wake up again all night!

Tues 4th Feb

Today Jacinta was 'brilliant' and 'perfect' all day. She may need platelets in the next day or two, but who doesn't?

She weighed a little on the low side and had low BP so they're talking less of the diuretic…which we always like!

I left her for a few hours with her dear aunty-to-be, and she did really well. She's been used to pretty much my sole company over the last two weeks, so I wasn't sure how she'd be. It was good for my middle one though, who started kindergarten today, and I'm glad that I went even though there were a few tears towards the end of my absence.

We saw the dentist, who's all about disinfecting her mouth, my mouth, anything that might possibly go in her mouth; the occupational therapist who thinks my suggestion of a routine is a good one and thinks her ability to play is "really, really good!"; the oncology consultant who doesn't mind getting down on the floor and asking Jacinta how she's going and how her day has been - and listening to her answer; several nurses who dropped in purely to say 'hi' and smile and wave and clap with Jacinta for several minutes when they had other patients to attend to….and a lovely present of crafty activities for the older girls to do.

The nurse took off the dressing from her jugular vein. It was almost perfectly healed, which is nice. I don't think she believed us that we weren't going to cause her pain, but it was pretty easy. I keep thinking her hair looks thinner, as though the underneath ones are going missing and her scalp is showing through. Hard to tell.

Lovely bath, reasonable bedtime and a dream feed. Pretty good day today. :-)

Wed 5th Feb

Today my middle one came in and we made good use of the crafty things which arrived yesterday.
Jacinta continued to have all the right numbers - even though it proved very difficult to get a blood pressure reading under 120 at times, due to her being so small and the planets being out of alignment.

The nurse came in to give her the dose of diuretic and I queried it. We did the above and found a lowish BP, then weighed her and found she was about 500gm less than when she came in. She decided to delay the morning dose. By lunchtime the Dr had decided to scrap the diuretic. Lucky move since she was looking a bit dry by then, so we had a crack at the new cup full of water and had an extra breastfeed. We weighed her later and she was much closer to the right weight and seemed much juicier. Phew!

If I learned one thing from our last hospital stay it was never to let a nurse do something you think might be wrong, no matter who they are or how intelligent. Too much diuretic got us into serious trouble last time so I'll be staying on top of that one, in particular.

Jacinta keeps on looking super healthy. No-one's complaining!

Thurs 6th Feb

A year ago today Jacinta was discharged from the Women's and sent back to Box Hill. Little bit of trivia for you!

Well! You know that thing about Jacinta looking super healthy……
About 2am - not long after I'd written the above, Jacinta woke up for a feed. She felt quite hot, but this heat dissipated. I put her back to bed and went back to bed. She woke again about 4, needing a feed. She felt quite hot again. The Oncologist had said last week that since kids with T21 tend to measure on the low side for temperatures, we'd be starting antibiotics if she had anything above 37. This stands to reason since a good temp for her on her first NICU stint was anything above 36 and if you got it above 36.5 you were doing well.

Still, during feeding her temp went down again so I let her fall asleep there again. About 6am she woke up again, hotter still and quite grumpy. The nurse came in and I told her she was pretty hot. 38.9 degrees hot, in fact.

Pretty much a no-brainer. We're on antibiotics. She's been quite grumpy all day, with small patches of less grumpy here and there. The play therapist AND the music therapist dropped in today, so we had a lot to do! Pity it was not her best day, but she made good use of the music therapist singing nursery chillout songs and she relaxed for a bit.

We also got a new bunch of some kind person's platelets and some other kind person's haemoglobin. What with having the music therapist today and all, I kind of made up a new song. Done in the Anglican tradition of taking a tune and assigning words to it, I've done it to the tune of "He's Got The Whole World"


I've got hae-moglobin in my blood
I've got hae-moglobin in my blood
I've got hae-moglobin in my blood
Haemoglobin's in my blood.

And there's a little bit of platelets in my blood
Just a little bit of platelets in my blood
I've got a little bit of platelets in my blood
Haemoglobin's in my blood.

Sorry about that. It'll be going round and round for days.

Friday 7th Feb

So we're still on antibiotics. We did a big blocked-up poo today. I swear she works as hard as a woman in labour sometimes so I know how she feels when she's finally got it out. Feeling slightly mean because earlier in the week the nurses kept assuming we were going to give her a laxative, which seemed unnecessary since her last two poos had been perfect. She'd only been a few days between poos - which for breastfed babies is nothing. I kept saying no. Maybe I should have said yes…. Ah well, it's done now.

The fever has subsided too, so we're back to square one. We're looking much more rosy and she seems much more herself, though she does have the black circles under her eyes a bit. I wonder if it's the antibiotics. Hmmm. I asked if I could give her probiotics and to my surprise the doctor on today thought it might not be possible. They're pretty happy with things like that usually, but he says that with the immune system so incredibly nonexistent, (I saw her levels and she pretty much doesn't have one.) even good bacteria has been known to cause trouble.

Today she had a good lunch of hot chips and sausages. Really munched away nicely on those and didn't feed very much, except at bed time. Big sisters were in tonight (yay!) and so it took about 2 hours to get Jacinta to sleep. Got there in the end though. I realised today that yesterday was Jacinta's 13 month birthday. Oops! Happy Monthday Jacinta!

Saturday 8th Feb

Goodness! It seems we've given up sleeping for the rest of tonight!
We went off beautifully by 8.30, once the nurses had stopped using the machine that beeps loudly every 10 minutes.  I went out for a few hours until about 12.30, at which time she must have realised that I was back and woke. I gave her a feed then she dropped off & promptly woke as soon as I put her down. We've repeated that about 3 or 4 times again. Now I've put on the music in the hope she'll do it all herself. It's 3.30.

So there was nothing much to report today. We dropped some antibiotic, which I think was because we were doing very well. The Hickman's oozing slightly still, which is probably because we pulled it yesterday by accident. No big problem though. I may well keel over as I write. So tired…………………………..

Sunday, 2 February 2014

Knock knock...

My daughters are in love with 'knock knock' jokes.
Their favourites are various types of cow, mostly interrupting cow and surprising cow, but they'll make them up on almost any subject.
(eg. "Knock knock"
        "who's there?"
        "knock knock"
        "who's there?"
        "knock knock"
        "WHO'S THERE??"
        "knock knock"
        "just tell me who's there!!!"
        "knock knock is there!"
        "oh, for goodness sake!!  That's enough knock knock jokes!!!")

Recently I've been trying to remember an actual knock knock joke to give them an example of how they normally go. It's been so long since I heard a good one that I had actually forgotten how they go!

I finally got one!! Ready?

Knock knock!
(Who's there?)
(Luke who?)
Luke Aemia !!
(har de har har chortle chortle chortle, oh how clever you are…)

So, yes. Luke Aemia turned up last Monday. Somewhat unexpectedly and very much uninvited.
But, he's a friend of the family…..
(We're going to try and poison him and hope he won't come back. Shhh…..)

And now we're cancer patients, in for a long stretch, that big cliche of horridness that parents throughout the world touch wood that they'll never be.

So I think it will be useful to document a lot of this, because when you've never done it before it's a lot to take in all at once!

I also found this week that I'm by no means the only parent of a child who had blood issues at birth who didn't have a clue about it and I might have just freaked some people out by mentioning our story on one of our Facebook groups… I'm going to write it all up here for parents to read and find out.

So, at the beginning, Jacinta had several things wrong. The main things to worry about were her heart condition and her feeding. The white cells sorted themselves out fairly quickly and the platelets needed a couple of transfusions before they righted themselves.

This stuff was such a passing thing that it was forgotten about once it was ticked off the list. The attitude was "these are all things that can happen when a baby is born with Trisomy 21 and they sort themselves out and you go home….except the heart condition".

So they sorted out and we had the heart op and that was it as far as I was concerned. Now we were free to go on our merry way and start working hard to ensure Jacinta's development was as close to on par with typical kids as possible.

Then one day about mid-last year I was on one Facebook group for families and friends of children with Trisomy 21. It's mostly a bunch of Mums with children of varying ages. One mum posted a very interesting post from another page (1) which talked about transient leukaemia in infants with T21 and how they can get leukaemia later in childhood.  This rang a bell because I remembered that leukaemia was to do with white blood cells and I remembered that hers were dodgy. I went back over her discharge summary and found "transient myeloproliferative disorder". "That's not transient leukaemia", I thought. I went to look up the difference. I found that they were two names for the same thing.

So I started researching things in quiet stolen moments about leukaemia, understanding a bit about the condition, the types, the prognosis, and the symptoms.

I saw the paediatrician and forgot to ask about it, since it was a different person.
My ears pricked up a little at the mention of a slightly enlarged liver and spleen - like the night she was born, but the paediatrician made no other mention of it.

Around late September Jacinta suddenly had a nose bleed. It was enough to drip out of her nose a bit, but not enough to keep running. It was more than a scratch but less than a continuous nose bleed.
I thought this was strange for a 10 month-old and I took her to the Dr. The Dr was not keen to inflict blood collection on a small child without just cause. He said I could if I wanted to, or I could wait and see if it happened again. I wasn't keen either and since he wasn't terribly concerned, I thought I'd wait. I asked for the arbitrary number of blood noses that would justify a test and he said, 'maybe three?'.

I went away and noticed that she had some large bruises on her forehead which I didn't recall her bumping. I mentioned this to the health nurse and she thought it was a bit odd. Over the next couple of months we had lots of end of year  and Christmas things and then Jan brought plenty of family things.
During this time, Jacinta became quite disinterested in eating solids and often would just lay her head on the high chair tray instead. She seemed a bit more tired than usual. She was also teething so these things could have been that.

I noticed a few tiny red spots on her skin, not like pimples or a raised rash, but like colour on the skin. The first couple were tiny, like a single hundred and thousand. A couple more popped up that were about the size of a long single sprinkle. These are called petechiae. (That's plural.)
The one on her cheek here in centre screen is an example. 
We had a few really hot days and I noticed that although the room was cool, she would be sweaty after a breastfeed.
All these things were still things that could happen for one of many reasons.
Then she started having difficult stools and she passed one which had fresh blood on it.
At that point I decided it was three. I went back to the Dr and got the slip for the bloods.

The interesting thing throughout all this is that at no point did anyone say, "oh yes, we should be wary of leukaemia since she has Trisomy 21 and had transient leukaemia at birth".

The nearest thing is when I went to the Cardiologist and he found slightly more leaking in the AV valve and an enlarged ventricle. He asked if she had any other symptoms and I mentioned the unrelated bleeding stuff. He rewrote the bloods slip so that they could get done that day and told me to get them done that day. I don't know if he suspected, but I think he may have done. When I spoke to him later that day he apologised for giving me bad news and I said that it was ok since I kind of knew it was coming. He said he kind of knew that I kind of knew, so I guess he suspected from the word 'go'.

So here's the thing. At birth Jacinta had transient leukaemia and no-one told us. On her discharge summary I believe it mentions transient myeloproliferative disorder. Same thing. Still no-one mentioned it, to my memory. This was being monitored for a couple of weeks in intensive care. There was time to mention it, yet no-one did.

Then when we visited the paediatrician she never mentioned it in her recap of the last couple of months.  Then at every visit she had the opportunity to mention it, but didn't. The age for onset of leukaemia is typical from 1-30 months with the average being about 16 months (2) . There's not really a window during which you should not be looking out for it.

10% -30% of children who have had transient leukaemia go on to develop leukaemia later on (2). This is not a tiny chance. If I was in a raffle with a 10% -30% chance of winning, that'd be pretty good.

So it baffles me that the first time I heard any medical professional talk about the incidence of children with Trisomy 21 coming in with leukaemia was the nurse in recovery after Jacinta had just had her bone marrow aspirate. She said it's not at all unusual to see. The Oncology guys certainly know about it. They have a separate treatment protocol and everything and didn't have to check any notes before telling us what it was.

So why does no-one else talk about it? Behind the times maybe?

Anyway, I am super glad that I knew to look out for it, since I tend to err on the side of "don't be silly, it's probably nothing", and if you listen to that post at (1) then it can move pretty quickly and some children can die of it undiagnosed within a couple of months….but let's not go there.

As I read in one article, "Most children with AML and Down syndrome can be cured of their leukaemia." (3) So that is what we'll focus on and just set about getting better. 

I've put a couple of links down here.

The first is the post I read that tipped me off. It's a little scary, but not a bad summation in layman's terms.


This second one is the one with the groovy statistics. Take a medical dictionary with you when you open this one.


This one has excellent colour pictures and explains just about everything to do with childhood acute AML in easy terms and bullet-point lists.


And, not to insult the intelligence of my readership but just to make sure there is absolutely no misunderstanding, I do not have any kind of medical degree. Despite the fact that many of the nurses think I am, I am not trained as a medical professional. What I say about Jacinta has no bearing on your child or his/her symptoms, diagnosis or prognosis. I'm just sharing to help shed light on things and hopefully help a child get help sooner, or at all.

I've been taking some pictures along the way, of varying quality. I'll be blogging as I go and showing pictures as much as possible to help people know what to expect.

And meanwhile we'll kill time in here as best we can!